[Susan Howitt]

@deets

For coughing at any time can e severe but at least it brings up the plegm, I take tiny sips of a good strong quality orange juice with pulp and keep an eye on myO2 levels which drop dramatically when I eat

 

regards Sue

[Susan Howitt]

Morning

 

I actually would not be without Predisolone.  Started off at a 60 mg dose like you but for 2 weeks only, sleep was a problem on a high dose, then weaned down to my maintenance dose of 10 mgs, been on that for three years with absolutely no problems.  At first I could eat a scabby dog but now al OK, I am allowed by my doctor to go up if I get an infection and slowly wean down again, way out in the country, easier for them than having to come out to me.  Hopefully once you get slowly down to a lower dose you will appeciate its benefits and all your other symptoms will dissapear.

I am 74 years old and stage four.

Best of luck  Sue

[Susan Howitt]

Oh Karen

I cannot believe you got that sort of answer, hope you said something along the lines of, put a pillow tightly over your face and see how long you consider lack of O2 not a priority !!!!   grrrrrrr

 

 

[Susan Howitt]

Hi Jill

I have ,  a Caire Hi-flow liquid content which go up to 15 ltrs , the other is a companion T P/N 775499-B, also up to 15 lts.

At first the filling up is a bit of a chore, you have to really press down on the filler end and keep up the pressure whilst filling, I count to 20, release lever listen until the gurgling (filling, quick 10 count) stops, then pull down the lever, 20 again, until you big O2 cylinder puffs out a load of vapour, dial should idicate full.  Some of these machines use a sort of weight system to see when full, not easy to judge how long you have left, try and avoid these.  The only care I do is when back pack has been used and is empty, doesn’t hold its charge and slowly uses up what is left, I take off the bottom and allow the felt to dry out.  If you get one of the wretched ones that uses a sort of key system to hold the bottom on, don’t bother, just use tape each time as key is useless.

 

Good luck in getting a really good one.  (Caire)

Sue

[Susan Howitt]

Hi Elizabeth

I am in France so my supplies are vastly different to the USA as well.  I get what I want and what I need no problems, just have to ask.

To my mind the bigger the portable concentrator the better as you can usually get further, bearing in mind that to my knowledge no concentrator seems to supply more than 3 ltrs no matter what number the dial says.  Ask for a back pack, I reasily got used to the weight as I had a double battery and could quite easily take my dogs 5kms then.

Now I have two back packs that take liquid O2 filed from the huge cylingers at home, they both go up to 17 ltrs, need 2 in my wild and wooly area as everything is so far between.

All the very best on your journey with this terrible disease.

 

Sue

[Susan Howitt]

Hi Marianne

 

I think that is awful that the O2 suppliers can decide if you do or don’t qualify even after a doctors note.  I had a POC long before I was on 24h O2, I now have 2 Pocs as my O2 needs are high and each POC goes up to 17 ltspm, the O2 company suggested I had 2 !!! so as not to be caught out by any longer than 2 hour visits.  I suppose I am luckier because the O2 company is state run.  Hope you get your POC soon

All the best Sue

[Susan Howitt]

Hi Wendy

Sorry to hear you have had a seeming exacerbation, quite scary aren’t they.  I am absolutely dreading the pine pollen season as I am allergic and live surrounded by forest of which quite a goodly proportion are pine trees as this is the biggest area for Christmas tree and timber production !!!

I can sit quite comfortably and maintain 90 saturation on 5ltspm but the minute I move  I have to be at 13 lts+

Cannot say anything about the medication as I have different lung diseases to you I think.

Hope you can get sorted to be more comfortable moving about.

 

Take care   Sue

 

 

[Susan Howitt]

Hi Sam

I am in the same position as you, at rest I am up to 92 but the minute I move I drop to 75/69 at my lowest, I up my O2 intake sometimes up to 13 to be able to shower, sadly only twice a week as it takes so much out of me, I have stools scattered around the house (live on my own but my daughter comes in twice a day)  to be able to rest on whilst my O2 gets back to at least 90.  I walk as much as I can even if it is only 10/15 steps at a time, I feel I just have to keep my big muscles oxygenated otherwise I will be bed bound.  I have to use a wheelchair when my daughter takes me shopping, can’t even propel it myself, she has to push me. I am on 5lts at rest and up to 13 when I move,on O2 24/7 for 18 months or so now.

Sorry no info on scooters my doors wouldn’t allow one any way.  Best of luck

[Susan Howitt]

I get nose bleeds all the time, not gushers but nose bleeds each time I blow my nose.  I am on asprin protect agains blood clots so also get random unexplained bruises, predisolone causes these too.

[Susan Howitt]

I have exactly the opposite problem, can’t stay warm, even with these last few days being very warm, 24° I am here in thick jumper and fluffy blanket with hot water bottle !!!  Not on any anti-fibrotic

 

 

[Susan Howitt]

Sorry Wendy, I just sleep through them too. I have found that if I eat something, usually a half cup of a substantial soup, I sleep deeper and better and seem to get through the episode faster.  Sorry can’t be of more help

 

stay safe   Sue

[Susan Howitt]

On oxygen I have a bubbler so until I went on really high out put  never had a problem.  Much to every ones horror I use a moisteriser (consisting of glycerine, parrafin and vaseline, prescribed by my doctor for my very dry skin caused by the scleroderma) up my nose now, silky smooth and works wonders for me, in the very tiniest of quantities. I know anything greasy is not recommended but I need to breathe and a dried out nose gets so bunged up I resorted to the O2 probes under my tongue one night just to be able to get O2 into me, very scary.

I wpuld never use a spray as they are usually designed to clear a nose and the more you use them the more you need to use them, vicious circle in my humble opinion.

Don’t think O2 will dry out your eyes unless you have an underlying condition that causes dry eyes, like scleroderma.

Take care one and all

PS Yes just found out the Avax oximeter is not available anywhere

 

[Susan Howitt]

Hi Bob

 

Dear Bob

I had 2 Inogen  concentrators one for the home and one back pack and was very very pleased with it but they only go up to a maximum of 3 litres a minute, as you say can be plugged in anywhere but please be aware that it has no filters re viruses etc so you breathe in anything that is in the air around you, scary in these Covid times, I am much more at ease with my liquid oxygen back pack but it has severe disadvantages that you can only refill it at home from a huge liquid O2 tank.   I am just about to be issued with a  Caire *stroller*  liquid O2that goes up to 17litres a minute, I now need 12lts

Take care all  Sue

[Susan Howitt]

Hi Marianne

Glad you got your Covid vaccine, even though I am classed a critically vulnerable I haven’t yet been able to get an appointment for the vaccine, I am too scared to take the Pfizer vaccine, my friends husband had the reaction I dread the most, he was unable to breathe easily for about 1/4 of an hour during the night following his vaccination, I struggle to breathe at the best of times.  The rollout in Europe is VERY very slow

[Susan Howitt]

Hi Marianne

I am English but live permanently in Burgundy France.   I am unfortunately I am at stage 4 following the latest exacerbation, and 27/7 O2, don’t need much when sitting or sleeping, 4lts, but if I move even on max which at the moment is 6,  I drop to 55 blood oxy, NOT good so have to have extra bottle that I can wheel around as a back up, having a Y junction on Tuesday so that I can hook up two big static cylinders together  with 10 metre nose hose. To go out I am in a wheelchair since last week as no back pack or portable bottle goes high enough.

Luckily for me here I am on 100% with the ministry of health and don’t pay a penny not even in insurance, everything is free, I know I am so lucky as no argument at all , I get anything I want and need. Was worried Brexit might make a difference but no, as I have been here 31 years even though not naturalised I am classed as a permanent resident with all the cards and papers needed.

Will pay you to have a finger oximeter so that you can stop and check before you get too low in O2

I only asked about CPFE  because your FEV stats stay level and your DLC has gone way down.

Hi  Marianne

I was offered CellCept last October which I thought was far too late and with Covid about didn’t want to not have any immunity at all even though I live in mini mountains in a teeny weeny hamlet of 10 houses.

Take care all,  Sue

[Susan Howitt]

Hello Marianne

Have you got CPFE?    Diagnosed in 2014 and on O2 for the last three years. I started off on a back pack oxygen recouperater (sorry can’t think of the English word)  they go up to a maximum of 3litres per minute but they can be plugged in to the electric current anywhere to recharge, including the car.  The problem with them is that,  with Covid about, they suck in air from around and haven’t got filters fine enough to filter germs !!! Now on liquid O2, and like Wendy I have the huge cylinders delivered weekly (3) plus 2 smaller ones, plus a smaller one for the car.  I have back packs, one bigger one (pretty heavy when full but you soon get used to it) and a smaller one (carry) that I fill, yes with mine you have to wait 15 minutes before using too,  and depending on ones usage it can last up to 5/6 hours, sadly in my case even on 7 it is not enough if I have to walk more than 10 paces and I have to use a wheelchair when out and about.  Only trouble with these back packs is that when filled and not used the O2 slowly leaks out.

I agree keeping fit is everything, I am not supposed to be here but having to exercise my dogs kept me going for 2 1/2 years longer than predicted with all my extra complications

Take care keep safe.

[Susan Howitt]

Each country seems to have different systems

I have huge cylinders that I fill my back pack from,and use for my O2 needs,  tried to find the literage but not anywhere visible, I use one and a 1/4 of these cylinders per week for my O2    (weekly delivery)

Wish my back pack lasted all day because of my O2 levels  it only lasts 1 and a 1/2 hours and even then I struggle

Insurance company needs to be informed if you have O2 cylinders in the house.

 

Take care Sue

[Susan Howitt]

Happy to have made you smile, please do phone back now that you are not in such shock at their original answer.

[Susan Howitt]

Hi Jill

 

No insurance increase on either my car or house (same insurance company) BUT I live in France and way out in the sticks so things might be a little more relaxed here   The sign on the door is NOT a requirement, just a polite warning in case of fire.

 

Hope you can get things sorted without insurance hikes.  I just had the feeling that I ought to inform insurance in case the O2 negatted my insurance, cos as you know any insurance company will try and wriggle out of a big claim.

 

 

[Susan Howitt]

Hi

I have only had to inform my insurance company, house & car, that I have large O2 tanks in the house+ 2 smaller ones and one small one permanently in the car. I do have a sign on the front door that Ii have O2 inside

Take care one and all

 

Sue

[Susan Howitt]

Hi Marianne

 

My oximeter was checked by the hospital during a recent stay and it was spot on this their electronic one, I do know that my other meter is a few ° out so rely on my AVAX one, my readings are all over the place depending what I am doing or have done, takes a minute or two for my levels to go done and about 5 to 10 minutes to get back up again depending on how low I get, lowest, verified, reading has been 55 !!

I am going to get another Avax meter just in case his one goes.

 

Take care   Sue

 

[Susan Howitt]

Hi Bill

 

Yes I am trying to get the Moderna vaccine, seems to be the safest one for me.  Can’t even get a Pfizer jab here even if I wanted it !!!  Live out in the sticks and in my county there were only 800 jabs (Pfizer available) and all went to Drs and frontline workers.  Being in the sticks I am safer, I hope, than most people.

[Susan Howitt]

Dear Joe

 

Just one warning about concentrators, as you are in the UK, they do not have filters that deal with Covid, so either use your bottled O2 when out in any sort of company or get a liquid O2 back pack, that involves having a huge cylinder (I have three + two small ones) in your home to use around the house with 10 metre hose  and also fills up your back pack which doesn’t *breathe* in the surrounding air.

 

Take care all   Sue

[Susan Howitt]

Hi Bob

I am a mouth breather too and have had to train myself to nose breathe. Never even considered face mask. I have found that if I lie on one side or the other that side nostril tends to bung up so also have had to train my self to sleep on my back, in a half sitting up position. Don’t need high concentrations of O2 to sleep 3 or 4 litres but when I move it is a lot higher, up to 10/12 sometimes now.  Covid is keeping me away from hospitals and pulmonologist (also in foreign country) so having to make my own decisions re O2. Luckily my O2 supplier will allow me to have what I need weekly with no questions, and even offer suggestions.

Oh yes the cold is a killer, if you go out use some form of snood or face covering to warm the air before it gets to your lungs.

Take care   Sue